30 Things About My Invisible Illness That You May Not Know
1. The illness I live with is: I have a Vasculitis disease called Wegener’s granulomatosis
2. I was diagnosed with it in the year: was finally diagnosed in 2011
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: The biggest adjustment I had to make living with a trach or t-tube. My trachea is being attacked and causes me to have Subglottic Stenosis.
5. Most people assume: that I have or am a smoker. That my weight has caused these issues. Which is not true. I have never smoked in my life.
6. The hardest part about mornings are: I wake up tired a lot of the time. Then I have a hard time getting started in my day.
7. My favorite medical TV show is: When House was on, I loved that show.
8. A gadget I couldn’t live without is: I cannot name one Gadget. I can’t live without my lap top and cell phone. 🙂
9. The hardest part about nights are: is getting comfortable in bed and actually falling asleep.
10. Each day I take __ pills & vitamins. (No comments, please) I take two vitamins and about 6 different medications.
11. Regarding alternative treatments I: I believe eating healthy is important. I have or had diabetes. That is one thing that I know I can control and I work hard in doing that. I know that if I feed my body mindfully it doesn’t cure my disease or but it does help it. And if my blood sugars are out of whack then that can cause issues too.
12. If I had to choose between an invisible illness or visible I would choose: You know I would choose an illness at all. That is a hard question to answer. I think I would choose one that is known and has curable treatments.
13. Regarding working and career: I currently am not able to work.
14. People would be surprised to know: I sometimes have to work hard to keep up a positive attitude and keep fighting on. I do it because I made the decision that I am worth fighting for.
15. The hardest thing to accept about my new reality has been: That I cannot be cured.
16. Something I never thought I could do with my illness that I did was: I can still laugh. When I first started getting sick I thought that life was going to be nothing but a miserable existence. It isn’t. Yes, I have hard days, and emergencies but I can still laugh.
17. The commercials about my illness: I have not seen any commercials about my illness.
18. Something I really miss doing since I was diagnosed is: Run, walk, breath without help.
19. It was really hard to have to give up: running around without having to take breaks.
20. A new hobby I have taken up since my diagnosis is: Writing, blogging.
21. If I could have one day of feeling normal again I would: I would hop on a plane and go to Italy and walk around and smell the smells.
22. My illness has taught me: To take breaks, communicate effectively, fight for me, but not be so aggressive that I cannot extend the same respect to someone else. Carry lists of my medications. Laugh a lot. Take time to read, pray, pet my cat, watch a great movie, that there are doctors who do care even if they have to torture you. Appreciate and show people you love them by words and actions.
23. Want to know a secret? One thing people say that gets under my skin is: It isn’t exactly what people say. It is what they do not say. I will give you an example. I went to a restaurant in Longview called Simply Healthy. It is an amazing restaurant, yummy food. I came rolling in with my bald head, pediatric trach tube, and wheel chair and people looked, but not with contempt but with curiosity. I wish that people could be more like children and come up and ask questions instead of just looking. I can see it in their eyes they want to ask questions, they want to know, but they are fearful. I would love it if they asked questions. The only time I bite someones head off is when they lecture me about smoking or my weight. I have had a few of those, but please “DO NOT BE AFRAID TO ASK ME QUESTIONS AND DIALOGUE WITH ME.” I feel like a freak with the starring.
24. But I love it when people: I love it when someone asks me questions about what is happening to my body. Who want to dialogue with me and treat me like a woman.
25. My favorite motto, scripture, quote that gets me through tough times is: I listen to music, up lifting music. Just as tenth avenue north.
26. When someone is diagnosed I’d like to tell them: I have not encountered anyone newly diagnosis with the disease I have. If I did, I would tell them that they are not less of a person because of it. There will tough day and good day.
27. Something that has surprised me about living with an illness is: that I can have a life. That people can be understanding. That I can fight for me and not be rude, though sometimes I do surprise people.
28. The nicest thing someone did for me when I wasn’t feeling well was: I have had some amazing things. My sister stocked my freezer with easy meals that are healthy, so I don’t have to rely on convenience foods. My friend Summer drove me to Seattle when my family was not available to take me to my doctor.
29. I’m involved with Invisible Illness Week because: I think it is important to get out there and talk about it, so I am not sitting at home feeling sorry for myself and feeling ashamed. Also it’s an opportunity to teach others.
30. The fact that you read this list makes me feel: I hope that it helps people to see and understand what it means to be sick and that you can have a life, it may not be what you wanted, but you can still have one.